[Rowejack]

Hi all
Been looking at this forum for a few weeks and decided to join so I can post ..Diagnosed in mid Sept with MG .after spending a night in the hospital with what I thought was a stroke . Initial neurologist made an accurate diagnosis but when I asked him what MG was , he responded ..its an auto- immune disorder and if you want more info go to the internet . Huh !!!!!
He's not my neurologist anymore .
He did put me on Mestinon ...60 Mg /three times a day . and new neurologist upped it to four times a day .
My initial symptoms...speech difficulty ...problems chewing and swallowing .followed by right eye droop , fatigue and neck droop . No lower extremity problems .
After almost a month on the Mestinon , I've improved about 30 % as of this week . Still have speech and chewing problems and fatigue ...Mowed grass this week in 94 degree heat ( Florida ) and that was tough .
New neurologist recommended Prednisone or Cellcept but I deferred for the present as Mestinon makes my daily life , livable . I'll rethink it if my symptoms get worse ...
Lots of folks in here much worse than I am ... so I'll count my blessings .
Thanks for all the great information and encouragement that I see here

Jack

[ewizabeth]

Welcome Jack!

I'm sorry for the MG diagnosis, but glad you found your way here.

This is a wonderful place with lots of nice people. I hope you'll make some new friends and get some helpful information as well. Take care.

[Joanmarie63]

A great big welcome, now come closer so I can slap the side of your head mowing the yard in 90+ degree weather!

I am glad the mestinon helps {I too only take mestinon}

I am sure you will have lots of questions and this site provides many answers as well as great, friendly support.

We are here for each other during good times and bad.

Hope we see you around often.

[bluesky]

Hi Jack!

Welcome to the forum!! It's good to have you and you'll find a lot of information and support here.

I have to admit my jaw dropped when I read about your feats of mowing. I'm both in awe and a little appalled. . Just appalled because I learned the hard way (I was stubborn and plus I didn't put two and two together) that even when I could do a tough task, I would be completely wiped out later. I mean a day or even two days later. It took me a few years to connect the dots on that one. So please, just be careful. I admire your spirit though. After 8 years of this I'm probably overcautious about pushing myself for fear of ending up wrecked for several weeks. Just please be careful, there's a fine line with mg. It's invisible and moves around too. It's one of the more frustrating aspects of this disease.

On a side note - geez these icons are so cool I'm tempted to fit the post to the icons. There are some really good ones that I haven't used. Maybe it's time to make up a good story. There, I got to use one!

Ally

[AnnieB3]

Hi, Jack. Welcome. This is a great place for info and support.

So that's what doctors are saying now, eh? For so long they complained that we got info from the Internet and now they are pushing it on us? Too funny. Or maybe he was being sarcastic, having heard one too many times that we look on the Internet!

I'm with these guys . . . mowing the lawn in FLORIDA?!! You may have to think about getting some neighborhood kids to do it. The heat not only makes MG worse but worse quickly. And when your muscles don't work well, like your breathing muscles, then your heart works harder to get you more oxygen (oxygen stats drop when MG is worse). If you are mowing the lawn while your heart is working harder, you could have a stroke or heart attack!

The thing with MG is that you might be fine now but not in a few months (especially if you keep going out in the damn Florida weather). Or days. Or hours. MG is stupid. If you push your body, MG will push back.

I am only on Mestinon because I can't take the other drugs until I get much worse. Lots of contraindications. I can manage to be okay as long as I don't do too much and balance activity with rest or sleep. I am on 90 mg. every 3 hours, round the clock. Sometimes increasing the dose amount is right, sometimes it's the frequency. Only your neuro can help you with that. Don't change dosing on your own. My MG crisis, when I couldn't breathe or move well, was after doing too much while in hot weather. Okay, enough lecturing.

I don't know what part of Florida you are in but the BEST MG neuro down there is Dr. Allan Weiss of St. Petersburg Neurology Clinic. He's an MDA Director too.

It's a big learning curve with MG. Drugs can make it worse (see previous posts or websites below). Foods can make it worse or better (nightshade foods like potatoes and caffeine). I did that just for you, Ally! Those foods do the same thing Mestinon does to varying degrees and it can make you stronger or weaker. They keep away the enzyme the eats up acetylcholine so that your muscles get more of it. Too much acetylcholine and you can get worse.

I hope you can continue to feel ok. Keep in mind that both Pred and immunosuppressants can take a while to kick in. Pred can make MG temporarily worse and has LOTS of side effects.

I'm sorry you have MG but you can manage it. I hope you will not have it get worse but that means behaving yourself.

Annie

www.myasthenia.org (national organization)
www.mdausa.org

[JCPA]

Hi Jack and

You will be glad you joined. I joined only a few months ago after my dx and I have learned so much from this group. A whole lot more than I have learned from doctors. Your dx sounds sort of like mine.....They called me and said "you need to see a neurologist." I said...why?? And they said well.....we will just fax you the information and you will see what the diagnosis is....so they faxed it to me and I have to do my own research.....What is it sometimes with these people????

Anyway, your next step should also be a scan of your thymus gland to assure that you do not have a thyoma if they have not already done so.

Glad that they were able to dx you rather quickly....alot of people go years without one.

Have a blessed day!
Jujuan

[dog lover]

Jack,
Welcome to the group!!! How nice of the Dr. to tell you to research your disease!!! I swear some of these doctors have NO bedside manner.

I am fairly new here too and though I have had symptoms for several months just recently got the official diagnosis and started Mestinon. My first symptom was weakness in my arms that started about 10 months ago. The ptosis is what finally forced me to go to the Dr. The first few days on the Mestinon made me so sick the Neuro took me off of it for 2 days and we restarted at a lower dose. So far so good with the side effects but unfortunately I'm not seeing much improvement in my symptoms like you mentioned. My Neuro told me he is thinking Mestinon isn't going to work for me and mentioned the Pred and immuno suppresants. I was totally opposed to trying them a month ago but honestly now am thinking it is worth a shot if the Mestinon doesn't do the trick. I am very leary of being on the Pred long term but am willing to take it long enough for the immuno suppressant to kick in. I know it is incredibly frustrating but we have to keep fighting until they find what works for us specifically. Please keep us posted on how you are doing!!!
Kendra

[SharS]

Welcome to the group! This forum is a godsend for support and very real help. Like the others, I have to say "Mowing the lawn in Flordia!?" Speaking from experience, MG is not the kind of illness you can "push through." It will catch up with you.

On a brighter side, it's wonderful you were able to get diagnosed so soon and begin Mestinon so you can function better. All the best to you.

[redtail]

Hi Jack,

welcome!!!!! just sorry you had to be here in these circumstances.

Mowing the lawn is bad enough but in heat is waaay bad, and I know I've done it, and in an Australian summer probably around the same temp. Took me a few days to recover,but the lawn looked nice!!!!

Look forward to seeing you around here some more
Kate

[Nicknerd]

Welcome to the group!

I agree with Redtail, that it sucks that it's under these circumstances, but there's nothing like being around others who know what you're going through! I'm so glad to hear that the mestinon is helping!

Take care, and hope to hear from you more!

P.S. Glad that you got a new neurologist